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Patient Stories

Voices of Rare Cancer: Lisa’s Story

Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis of stage… Read More

Voices of Rare Cancer: Brian’s Story

WHAM! The news I received from my doctor was a left hook to my temple thrown by Muhammad Ali. I was just told that I had myelodysplastic syndromes (MDS). My name is Brian. It… Read More

Voices of Rare Cancer: Susan’s Story

Hi! I’m Susan from Philadephia. My journey began in 1991 when I visited a local dermatologist for a strange rash that didn’t go away. That day changed my life. A biopsy was taken and… Read More

Voices of Rare Cancer: McKinnon’s Story

This is my story about NF2. This journey began when I was 16 and got hit in the head from a volleyball. I went into a routine MRI and came out with brain and… Read More

Voices of Rare Cancer: Aidan’s Story

My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to my lungs… Read More